The truth is that it's different for every individual. Im sure it's dependent upon lots of factors - including how much you enjoy sex and at what frequency even before your op. I guess Im Mister Average and I like sex and intimacy but Im also not someone who defines themselves by it. My partner and I view intimacy as an exchange of energy and not necessarily dependent upon penetrative sex. Of course, you need that to varying degrees too!
As far as erections go, my personal experience has been better than I expected. I had the nerve sparing procedure. My surgeon had me on a regular dose of viagra/cialis/levitra about six weeks after my op. I'd take a couple of those a week just to stimulate blood flow and get things going again. I had zero erectile function to begin with but could just about get a quite floppy erection using these in the first 3 months or so. No good for anything really but I just kept going with the "massaging" and meds. Just occasionally I'd wake up in the night with a normal erection. Just like the old days! And I took this as a good sign. One thing that stuck with me from early discussions with my surgeons prior to the op was that he said that in his experience, people who continued with stimulation of the penis and kept trying to "use it" early on, had a better time with regaining erections. So I perseverd. Of course the main ingredient has to be a good nerve sparing op to begin with. But its not the only factor.
I think about six months after my op I was able to have sex normally but only with the meds. I also tried the injection which I thought was pretty effective. Now, a year in, I still use meds occasionally but amazingly can actually function without them a lot of the time. I use the meds as an insurance as I know they work. It's a bit depressing to be feeling really up for it and to be let down by non-compliant apparatus!
Psychologically I found (and still do to some extent) that I feel kind of more "delicate" down there than I did. And this does effect how i am with sex. also, as i still leak a little I have to make sure I empty my neo properly and it's often in the back of my mind that I may leak a little during sex or just prior to or just after. this is a bit of a drag but we're ok with it.
I fully expect the next year to be a continuing improvement; greater reliability and no meds at all. But I believe, except for the most extreme cases, that there is a soloution to erectile problems post-cystectomy for most people. Im sure others will weigh in here with their experiences.
All the best
tim
